For the last year or longer Daddy has had a HUGE issue with, this is gross.. lots of mucus flowing from his nose when he'd eat and (he or his wife..) would wipe his nose with napkins 6-8 times during dinner. And of course, excess mucus is a psp symptom. After a year of this at EVERY meal, it suddenly stopped, several weeks ago, just totally stopped. I wish other symptoms would suddenly disappear but if there's been any other noticeable change recently, it would be he talks even less now and is unable to help assist moving him from bed to wheelchair to recliner. I know psp isn't an exact science and so little is really known about it in the medical community, not all sufferers have all symptoms thank goodness, but, it's almost cruel, this small false hope. HOW and why would a major and consistent symptom suddenly disappear! I mean it's not called progressive for nothing that's for sure. So how? And it's taken me weeks to DARE share this with you all because, don't want to JINX this tiny bit of a "GOOD luck" blessing for Daddy. I and we are VERY thankful for any "lucky" breaks in this world of psp.

18 Replies

Brian had that symptom for a year or more (at the start) ... was very gross but his was all the time. I can remember thinking its like his brain was leaking out. But then all of a sudden it just stopped. Not to be seen since.

WOW. Thank you. You're right, the psp causes changes. Because it's a growth on the brain, if it affects a place in the brain, if it stops does that mean the growth moved away from that part of the brain? In my layman's mind, I don't understand what would make any symptom suddenly disappear but if that could be understood, could it lead closer to finding a way to manipulate the progressiveness of the disease, to undo more of the symptoms? It would, in an almost perfect world. Psp is far from that. (A "perfect world" would consist on no psp to start with!)

The same with my husband. For a couple of years soon after diagnosis as soon as he ate, there it was Yuk! He also forgot how to blow his nose so that didn't help. His stopped as well. He has far more mucous coming from his mouth now and he has had a suction machine for some time. You will find things do come and go. It's this roller coaster we keep talking about. For a time things look not so bad then suddenly, whoosh, they take a dive and you think it can't get worse, things settle down, seem to get a bit better, yes! You can cope and then it happens, another dive and you hit the "I can't do this anymore" stage again until it settles down, you get used to the change, and so it goes on, up and down along the flat until the next dive.

I make the most of the ups and levels and don't think about the dives until they come.

Thank you Nanna! Your reply spoke volumes. My dad's wife is always the first to say, he's getting worse and I'm always, like, "NO! he's just having a bad day, or a hard time because he hasn't had a BM in days OR etc etc". I mean, when you're around the sufferer more than anyone else, day after day, it's easy to avoid seeing the dives because it's all a blur. Then, to see a photo of Daddy just 3 years ago, it snaps me out of my blur, hits me all at once how far he's plummeted into the dive. And you're right, prior to each stage or each permanent dive, I think to myself, I won't be able to handle it, as his daughter, but then it comes and it's sad and terrifying. Then I handle it because he'd have done it for me and because I love him and he Needs my help in ways I don't guess a person could imagine unless they'd walked in those shoes too, as an adult. How's that for a rambling late night thoughts of a reply? Haha! Day to day no more no less right Nanna! Wishing and praying for you all things good, ~Sheila

Hi Shelia, in reply to your other post, lovely photo of you, your daughter and Dad. We all have photos like this. Looking back, it hardly seems possible that so much as happened in such a short time, yet that time has taken forever. All you can do, is keep photos like this around, to remind you and everyone else, that your Dad, IS still that person.

S has been the same, nose pours like a tap, but only at breakfast. The past few months, it's hardly been there, just the odd day, it flares up again. It's just symptoms changing, no doubt, we will both be asking for help with thick mucus very soon and be longing for the days of the tap!

I would trust your Stepmothers views about him changing. S must be going through one at the moment, not sure what it is, but I am just not coping at all, everything is out of control, I am exhausted, but I can't find the reason. First I thought, I was having a bad time, but now starting to realise, it's not me, something is going on, no doubt it will make its self obviously soon. God, this disease is evil, everything has to come in through the back door, when you are not looking!

Yes, "everything has to come in through the back door, when you are not looking!" And just when you heave a sigh of relief, because you've got something taped down, there's a "sproing!!" and something surprising comes undone! I think realizing and accepting, even expecting, that is beginning to help me cope more sensibly. I'm not generally good at going with the flow, but I am having to learn to ride the current, and maybe that's one point of it all.

EVERYTHING said here is SO dang true!!!! Heady and EC, the other day B's Peg sprokit sprung a leak all over my car...I thought he vomited!!! Now his catheter....OMG without me , dad can neither eat nor pee....One tube in , one tube out!!! I'm still the lucky one here tho, as I do not have to take care of his poop needs yet!

Hi Heady, sounds like you aren't in coping mode at the mo, try to hang on and get through it if you can. If not you have to do what you have to do, not all of us are cut out for this role 24/7, so so hard.

Trying very hard to get respite for S, near my daughter, so we can both have a bit of a break. They have agreed, but Devon don't book respite care, until two days beforehand. I have booked a back plan at the place he normally goes, but that's not for another month. I won't last that long, so got to spend today, (if I can get hold of anyone!) trying to find a compromise.

Ben back home Monday, have equipment in place but support seems very thin on the ground, can't believe there is nobody available to help me through this initial stage until I get things organised for myself. Trying to oversee the building work, arrange all that needs arranging for his return and 3 to 4 hours hospital visiting has left me exhausted, trying not to get into too much of a panic but truth be told I am very scared. Hope you get your respite sorted, sounds like you well and truly need a break.

Funny I read this post after I wrote a response to your other post....we both noted what progressive means.....just weird we both had the same thought...not much else to think about I suppose...yah I doubt you'll jinnx it but it is weird...it may be that he has a sinus infection...those things will stop you up...unlike a cold or even heat that seems to drain the sinus ( from food)...that's been my experience with sinus infection! Thsi may be the reason he doesn't want to move.....he may be sick...I'm sorry,....I don't want to bum you out but it may be a factor to his symptoms

You're not bumming me out. I'm thinking this would be good because there's a cure to a sinus infection. If it's all just ******* psp, (scuse the language,) but if that's the case it means he's declining again to a new plateau. And funny you suggested this as a possible cause because a few days ago he suddenly sneezed about 5x in a row which made me think allergy. He never sneezes. And I don't know if it's from being elderly, or elderly and with psp but any infection or added illness creates the oddest symptoms for Daddy! It makes it very hard to figure out what's going on when he's sick. I'm going to pass all this information on to his wife who is the decision maker. thanks for taking the time and have a blessed day!!

I have to admit the more I think I know the more I learn I don't know. I did not know that this may be a symptom, of PSP... contrare to the folks here, B has not displayed thick mucus like excretions....not being able to spit, yes but just normal saliva....Anyway tell your dads wife...have you suggested this site to her ? It's kinda nice to have this place to your own but then again I don't hear anything disparaging between you ....so maybe she could benefit from this site?